Collaborative Innovation in Gene Therapy Patient Engagement: Insights from Ultragenyx and International Foundation for CDKL5 Research (IFCR)

Time: 1:00 pm
day: Pre-Conference Day


Join us for an interactive workshop where we delve into the intricacies of collaborative innovation in gene therapy patient engagement, drawing on the experiences of Ultragenyx and the International Foundation for CDKL5 Research. This session offers a unique opportunity to exchange real-world challenges, solutions, and best practices in navigating and building strong partnerships between patient advocacy groups and industry partners.

Interact with peers to:

  • Explore challenges faced when working with industry partners and learn how Ultragenyx and IFCR navigated building trust through transparent communication
  • Understand the critical role of trust-building in overcoming challenges and maintaining positive relationships
  • Gain insights into Ultragenyx’s approach to transparency and proactive issue resolution, ensuring a positive working relationship
  • Learn how to address issues like information gaps and miscommunication, emphasizing the need for transparency and openness
  • Understand the challenges posed by external factors and the importance of transparently managing expectations
  • Explore the significance of involving advocacy leaders in the early stages of clinical trial design, clinical trial readiness, and material development